What happens now; what do I ask?

So, it seems I'm not the first to be here for prostate cancer. That's good news; I've got company ... and those posting are still alive, also good news. OK, I can get through this, right?

After I had a DRE and biopsy, I happened on the forums last week after Googling some terms - blood in semen, lump in prostate - and these forums popped up. I thought I'd better get some general knowledge in case I got the 'bad news.' Well, today, I got the bad news, one week after biopsy. I'm 53, never hospitalized for anything, sitting in front of my urologist and he tells me I've got prostate cancer. I guess what happened next was akin to an out-of-body experience ... Me? Prostate cancer? Why? How? The urologist (Ranjit Jain, M.D. F.A.C.S) didn't really say much, and I didn't know what to ask right that second ... but he gave me the cards for two other doctors - one that does radiation, one that does robotic prostate removal. He said my options were radiation or complete prostate removal. Of course, option three was do nothing and wait for this junk to spread, I guess. Dr. Jain did say he doesn't think it's spread and is isolated to the prostate. I was handed the report and walked out the door feeling numb. Of course, reading a few things here and the introduction thread was helpful. But can someone tell me what this report means?

I saw the MRI, too, and one section was cloudy, whitish. That's where the lump is, described as a 'right, firm induration on DRE.' And it hurt like fire when he poked it.

PSA background: First diagnosed with a PSA of 5.3, July 7, 2015. Recommended by primary physician to see urologist. I did nothing ... ignored it. A few months later, I had these sudden - and I mean sudden urges to pee. No warning, I had to piss and piss soon. So, I thought, something isn't right here, and also noticed my libido was lacking. No desire for sex, **********, etc. Not normal for me. On Jan. 28, 2016 I got another PSA test; 6.9. So, that brings me to today's report and numbers after 12 biopsies of six sections of my prostate.

From the report:

A. Right Apex - adenocarcinomo, Gleason Grade 3+4 = score of 7, in two of two cores, involving 80% of needle core tissue and measuring 30mm in length.

B. Right Mid - adenocarcinoma, Gleason Grade 3+4 = score of 7, in two cores, involving 60% of needle core tissue, and measuring 15mm in length.

C. Right Base - adenocarcinoma, Gleason Grade 3+4 = score of 7, in two cores, involving 50% of needle core tissue, and measuring 13mm in length.

D. Left Apex- adenocarcinoma, Gleason Grade 3+3 = score of 6, in one of two cores, involving 30% of needle core tissue, and measuring 7mm in length.

E. Left Mid - adenocarcinoma, Gleason Grade 3+4 = score of 7, in two cores, involving 50% of needle core tissue, and measuring 14mm in length.

F. Left base - Acini and stroma.
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Ok, so to me this sounds like basically my entire prostate has cancer, except for the left side/base, which is fine? Hell, I don't know. Two pathologists - both P.H.D's - signed off on this report done by LMC Pathology Services in Las Vegas, NV.
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So help me fill in the blanks (no pun intended) ... what questions should I be asking? At this point, after what I've read here, radiation doesn't sound like an option for me, and five days a week for 8-10 weeks of radiation is just not doable. I'll be referred to a surgeon O. Alex Lesani, M.D., Fellowship Trained Laparoscopy and Robotic Surgery.

Now I'm reading all these threads about men who can't get proper erections, are incontinent, etc. I guess that's what I have to look forward to? A thousand questions and I can't think of anything specific to ask right this second.

Thanks in advance and thank you for this wonderful resource for newbies. Now can someone help me make a signature that includes the proper numbers? Seems you all have one. I don't know how to do that.

Post Edited (WadeB) : 5/3/2016 1:36:10 AM (GMT-6)

Welcome to the group, sorry you have to be here. When I discovered I had prostate cancer, my first thought was panic, but then I decided on the following:

Get a second opinion on your prostate biopsy. I chose MD Anderson here in Houston, but others can tell you some additional experts who can read it.

Next, I got the information on the three different options - the same as you have. I then talked with the URO who does the Robotic surgery and the radiologist. I also spoke with the URO about Active Surveillance. After that I thought it through and decided on the best option for me - each person just has to decide what is best for them.

Breathe, take it easy, think it through with a clear mind, and eventually come to the decision that is best for you. Keep asking questions.

Best of luck.

Welcome to HW, sorry you need to be here.

First slow down, you've got time to make an informed decision. I hope you've checked out the sticky threads at the top of the forum - there is a list of Q's in there. Best thing now is to start getting second opinions so see those other doctors.

Likely either surgery or RT will work. Not all radiation treatments require weeks lying on a table. There is SBRT and the brachy (seed implants) that can deliver the radiation much faster.

Hang in there and keep us updated on your progress,
Andrew

Hi Wade,

Yup, it's a shocker - leaving most of us dazed and confused (well, speaking for myself). This is no time to be making a life-changing decision, and fortunately, you have time (several months at least) to get used to the idea, to gather info, meet with doctors, and make a choice that works for you.

Your kind of prostate cancer is called "intermediate risk." You've interpreted the biopsy correctly - GS 3+4 high volume (i.e., >50% in many cores). That means there's a really good chance that any of several therapies can cure you. Here's a list of therapies that you'll want to investigate:

• surgery (open or robotic)
• SBRT (4 or 5 treatments)
• HDR brachytherapy (1 or 2 hospital stays)
• LDR brachytherapy (1 procedure)+ IMRT for about 5 weeks

I didn't put IMRT or protons (about 40 treatments each) on that list - they are lengthy, expensive and no better than any of those I listed.

Now, the hard part is that you have to find a specialist in each of those and set up meetings before you make a decision. We can help if you tell us where you are. Are you in LV- if so, get in touch with Tony Crispino.

Wade, sorry you've joined us, but welcome.
On the one hand, you are low intermediate risk with a g (3+4). On the other hand it sounds like there is, as you said, quite a bit of cancer volume, lots of cores, if not the % of each core (which could just be the way he caught the tissue).
Im not sure about a second opinion, only because i dont know if it would change treatment options. With so many cores, you are probably not a good candidate for active surviellance, even if you were downgraded to G6. But when i say i am not sure, i am really not sure. So you should wait for someone else to chime in on that issue.

As TA said, you have lots of specialists you should want to see, in each discipline. But also as TA said, its quite likely that in the end you will be ok. So try to focus on that for now. Good luck keep us posted

Yes, Wade, the first thing you ABSOLUTELY need to do is get that second opinion on the biopsy, since everything flows from those results.
Jon Epstein at Johns Hopkins (google him) is about the best you can get. That's all he does, PC.

It is easy to get it done. Check out the web-site.

Mel

Hi Wade. My prostate size initially came from an ultrasound. It was mentioned by my 2nd urologist when discussing options. I would suggest seeking a consultation with the best radiation oncologist as next step. Keep an open mind on travel for visiting experts.

Hi Wade, Not much to add from the others but just sorry you have to be here and I am glad you are researching as much as you can - you have decisions to make, but only after that very valuable 2nd opinion. Good luck and keep us up to date. Take care. -JR

Wade is was nice talking to you, too. The two docs that deal with the disease I think you should talk to are:

Dr. Oscar Goodman Jr. Oscar is the son of our current mayor and former mayor. He is also an awesome prostate cancer researcher.

Dr. Nicholas Vogelzang is one of the top researchers on the planet and works with Oscar. (702) 952-3400

Nick will be our guest speaker on the 18th.

Alex is a surgeon that performs robotic surgery. He has been a past speaker for my group. I like him he's had quite a few patients in our group.

David was my RO back in 2007. He too is a great guy and like Porsche's I am doing well and David was a part of my team with Nick and the City of Hope in LA. I decided to have surgery there because back in 2007 I wasn't confident about surgery in Las Vegas. But Alex wasn't here then and I would have had no problem with him doing the work.

Your stage at T2b is subject to be changed and given your core samples, Gleason Sum and percentages of positive tissue, you would likely be upgraded at surgery to pT3x. Depending on what they find in the lymph system it could be pT4x. Regardless, you can do very well with this and a positive attitude will help with your steps ahead.

See you soon!

Wade, sending your slides for second opinion is easy: ask your doc to have them sent to Epstein at JH. They take care of the rest.

As far as other tests go, it's pretty standard to have a bone scan and a full body CT scan, ask your doc if he needs you to do that, and again, they'll set it up. At your numbers, there probably isn't anything they'll see with them. My scans showed "bone deterioration in both shoulders and the left knee" and a small hiatal hernia. As if I didn't already know about that.

Oops.... Never mind, you two already chatted